Health Insights

Health advocacy — that of patients, families, friends, caregivers, and supporters — can help to improve the accessibility and quality of care available to you and those with X-linked hyperphosphatemia (XLH) and other rare diseases. Here is more information about health advocacy, its importance for patients with XLH, and…

X-linked hypophosphatemia (XLH), which results from a loss of phosphate from the kidneys, is known to lead to muscle weakness, muscle pain, and problems with the bones and teeth. But in addition to these common symptoms, patients with XLH also may experience problems directly in their kidneys. The…

Given the disparate symptoms that can occur in X-linked hypophosphatemia (XLH) — including bone abnormalities, muscle weakness, and pain — it’s important to coordinate between a multidisciplinary team of physicians and other specialists to ensure that you or your child get optimal care. XLH is a rare…

Like most rare conditions, X-linked hypophosphatemia (XLH) is a complicated disorder that many people may not fully understand. There are both myths and facts about the progressive, inherited disease. Here, we help you separate the myths and the facts and learn more about XLH. XLH is a childhood…

Providing constant care to a person who has X-linked hypophosphatemia (XLH) can be depleting emotionally, mentally and physically. Sooner or later, you must replenish your reserves. Respite care for families affected by XLH is an opportunity to rest, relax and recharge. About XLH XLH is a rare genetic disease characterized by…

If you or your child has a chronic disease such as X-linked hypophosphatemia (XLH) you may benefit from paramedical treatments. Following is a look at some of the ways such treatments are used to help manage this rare disorder. What is paramedical treatment? Paramedical treatments are services provided…

Living with a chronic disorder such as X-linked hypophosphatemia (XLH) can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your or a family member’s psychological and physical well-being. About XLH XLH is a rare genetic disease characterized by low levels of phosphate,…

Patients with X-linked hypophosphatemia (XLH) may experience sleep problems. Good quality sleep is essential to maintain physical and mental health. It may be helpful to practice sleep hygiene to improve your or your child’s sleep quality. About XLH and sleep disturbances The main reason XLH causes sleep disturbances…

If you or your child received a diagnosis of X-linked hypophosphatemia (XLH), you may want to consider enrolling in the XLH Registry. The information collected in this registry helps researchers better understand the disease and its long-term effects on the body, and also pave the way for the development…

X-linked hypophosphatemia (XLH) is a rare genetic disorder caused by mutations in the PHEX gene that results in the loss of phosphate through the kidneys, affecting patients’ bones and teeth. Pain and stiffness are known symptoms, and can be severe enough to disturb sleep. A small survey of…